Hi there.

The saga continues…I was beginning to feel a bit more optimistic about everything that’s been going on with my little one when I started reading about infantile spasms. Oh my gosh, are they scary! Hmmm, went my little brain and all the posturing I assumed was reflux related became spasm related. Needless to say I’ve been camcordering like MAD the past couple of days (including when I’ve been nursing, trying unsuccessfully to keep all questionable parts covered). My pediatrician doesn’t think that spasms are likely but told me to go ahead and try and tape any episodes and show them to the new neurologist that we’re seeing on the 21st. Also, I have an appointment (finally!) with the EI people on Wednesday, she suggested I run it by them as well.

Then I thought, I know she has reflux, everyone in the family does, she has low tone and some other stuff, maybe it’s Sandifer’s Syndrome. Not great but preferable to infantile spasms. I just read the other thread briefly, but I thought I’d start a new one…my question is, if your child had Sandifer’s or you or your doctor suspected Sandifer’s, did you also consider infantile spasms? Did you consult a neurologist, have an EEG, etc.? I’m not sure how to proceed now.

By the way, Katie’s eyesight has been getting MUCH better! I’m feeling very happy about that at least. It’s not great but at least she’s taking notice of things and starting to track and smile.

Thanks! Julie

Thanks for the update, Julie! I'm curious as to why you're supposed to show the video to the Employment Insurance (ie, unemployment insurance) people though. Maybe EI means something different down there? What has been the problem with Katie's eye sight?

I think she means "Early Intervention," Janette. It's a government-funded program in the US for children under 3. If Catherine is officially labeled "speech delayed," she'll receive services under this program as well.

Julie...I don't know anything about Sandifer's syndrome, but I wanted to wish you luck at her upcoming appointments, and say glad to hear her vision is improving!

Good luck with your appointmtnet. Good for you to tape the espides as well. I know that Zoee has the spasms(butnot Sandifer) and they did an EEG right away on her! Please keep us updated on the neuro. appoinment!

Sorry, it's Early Intervention. They offer a bunch of services for kids 0-3 "at risk" for developmentaly disabilities. It's taken a while to get them started but I'm hoping to get as many services as I can. The main one now is physical therapy to help improve muscle tone.

I was really scared about infantile spasms because they can cause such serious disabilities if left unchecked. The more I look into it though, the more I think her posturing and moving have more to do with reflux than anything else. I also had a really nice woman on another list send me a video of her daughter having both kinds of seizures to help me differentiate.

It's hard waiting for doctor's appointments, and then they never have all the answers anyway.

Thanks for the good wishes. Julie

Sorry I am late on this. I know that there are only a couple of people on IRD who have been diagnosed for sure with Sanifers as it is really truly rare. The question you ask is a good one and I would suggest you go into the poll forum and place the question there are you may receive a better response. If you need any help with that let me know.

Is it the 21 of this month for your appointment? If so GREAT! It may seem like an eternity but it is not long now.

What are the infantile spasms you are talking about and how do they compare to sandifers?

Glad to hear her eyesight is improving. :)

Thanks. I think I might be overreacting - I certainly hope so. Our appointment with EI is tomorrow, hopefully it will go well. I'm going to run my video by them and see what they think.

Oops, forgot to add, infantile spasms are basically little seizures (as I understand them) that can cause serious brain damage and lead to mental retardation. Very scary and best treated early.

Oddly, we now have a thread here on infantile spasms by another Mommy. Take a peek and maybe you can both compare notes.

Please do let us know how things go at your appointment. Not far to go now!

Julie,
I too started worrying about infantile spasms after reading about them a bit. I always thought my 9 month old had Sandifer's, but now I'm starting to second guess myself. My daughter only does what I've deemed Sandifer's symptoms during and after feedings- she stiffens out her legs, arches her back, tilts her head and neck back and to the left. Sometimes I've notices her eyes roll up a bit as well. I usually hear her burp up and reswallow at the same time. I've been petrified about it the past few days. My doc is ordering an EEG to make sure it's not seizures. He did tell me that with infantile spasms, there are usually very significant delays notes in infancy as a sign that something is wrong. I'm so worried about this now. My 2 year old has febrile seizures so I thought that I knew what seizures looked like, but after reading more about seizures in babies, I realize that the presentation can be very different. I hope that things turn out well for your daughter.

Lori

It's hard not to be scared to death. Infantile spasms are so frightening. My ped said the same thing about delays - she thinks Katie's made too much progress developmentally to be suffering. At our EI appt the PT scored Katie as 3 months - she's 3 3/4! The neuro (who we don't like)said less than a newborn, my ped said 2 months, and now the EI people said 3. I don't know what to think! I've been working with her and I am convinced the reflux is contributing to her low muscle tone. I rewatched alot of the video footage that I thought looked suspicious (for seizures) and now I think maybe I was reading into it. We're seeing a new neuro on Tuesday, I am going to ask her about doing an EEG. Even though I doubt now that she's spasming, I couldn't live with myself and it turned out she was and had major brain damage.

Good luck with your EEG and thanks for the info.